NOPE... It was seizures. She had 2 tonight, and afterwards I realised that today could have been build up too them (Question for the WHS mums: Can seizures build up over hours or days????)
They were not big seizures, both lasted 5 minutes, however as there was build up all day, Ellie was really agitated after the second one.
We have been in contact with Ellies neurologist over the last 5 weeks since her last seizure. She hasnt had seizures but she has had STRANGE behaviour, so her meds were up'd twice. Now that she has had 2 seizures tonight, the meds may be up'd again, ill be in contact with him Monday.
On a good note, Ellie hates anytime I try to get her to practice sitting, so a few days ago we practiced side sitting, this was SUCCESFULL, no screams, and she weight beared slightly. This is a good sign, I am now going to work on side sitting, and hopefuly this will lead to sitting. Fingers Crossed!!
I am not so sure of this sitting business Mum...
Look Mum.. I can do this without your help
All this sitting makes a girl tired... time for cuddles with Dad
Mel- so sorry about the siezures. Ughh... seizures just make me so mad. Norrah has not had a seizure so I don't have advice but I will be praying for you guys. AND... I love that one picture of Ellie side sitting. She definitely looks like she is saying "I can do this myself, so back off!" HA HA! Sassy.
ReplyDeleteI love the pictures! Ellie is so beautiful and makes the cutest faces, she has a way of communicating her feelings. So sorry about the seizures. I'm sure it is frustrating to take a few steps forward and a step back. Hopefully the meds will kick back in with the new dosage and she will continue seizure free.
ReplyDeletehello mums...
ReplyDeletenice pics of beautiful Ellie...!
i'm so afraid of the words seizures or fits. my little baby has not gone through that yet. hopefully not at all. but after all, i need to prepare myself if suddenly it happens. Melissa, when was the first time ellie started to have seizures? how to handle her? what should we do? it is dangerous? sorry for having a lot of questions. tq anyway!
Hey Mel,
ReplyDeleteI am so sorry to hear about the seizures. I am fairly sure that there can be a build up to seizures.
Often seizure activity doesn't immediately show up as seizures straight away. I know that in some people they have an 'aura' just before they have a seizure, so things smell funny, look funny etc.
Hope she is ok.
Love how she is sitting so well!
We will be down at the RCH 3 days in a row in the week starting 25th Jan. So hopefully we can organise to meet you guys??!!
xx
Hi Ladies, thank you all for your comments on Ellies photos!!
ReplyDeleteMin - FIngers crossed that your little one doesnt get seizures, there are some WHS children that dont get them. I think (but am not 100% sure, that the figure for seizures in WHS kids is 50%) Ellie had her first seizure in September 2009, as this was her first one, we really didnt know what to do, so we called a ambulance immediately. You need to make sure they are not in a dangerous spot or position when it happens so move any toys/furniture out of the way that could hurt them... Ellies havent been dangerous, as she kept breathing throughout hers. Dont worry yourself over them, lets just hope that you are one of the lukcy ones who doesnt get them. How are you going since the diagnosis? Hope your all well
Anna - Thanks for the comments on seizure build up... it makles sense as Ellie was strange all last week, no seizures just strange behaiour, then the seizures came on. She is ok now, not 100%, still iritable and miserable... so we are laying low inside with the air con going in this heat.... Yay!! Love to meet up, 26 and 27 is good for me, you let me know what time and which day suits you . Cant wait to meet you!! xx
mel,
ReplyDeletetq for the info. my baby is only 1 month old. so i can say that i have not seen anything wrong with her. not sure afterward, hopefully she's going to grow as normal as she can. i'm fully breastfeed her as i'm not a working mum. i'm starting to accept n keep our normal life as possible. life has to go on right? thanks again!